It was a 70-degree day in January 2014, and Cristin Buckley was at her daughter’s basketball game with her husband and twin sons. The boys were planning to head to Target to buy baseball cards after the game, but before they could leave, 7-year-old Ben said he was having difficulty breathing and needed a nebulizer treatment.
Ben’s dad took him home. “My husband called me and said, ‘Have you ever done a nebulizer treatment and have it not work?’ and I said, ‘No,’ and at that point he realized something was wrong,” Buckley said.
Forty minutes after they left the basketball game, Ben was unconscious in their driveway. A police officer was giving him CPR. Ben was rushed to a hospital where a team worked to revive him. They got his heart beating again, but doctors said Ben had minimal brain activity. Days later, Ben was removed from life support and died.
Buckley of Southington said she never knew you could die from an asthma attack but by the time she learned that it was possible, it was too late.
In 2017, 3,564 people nationally died of asthma, according to the Centers for Disease Control and Prevention (CDC). That’s 10 people a day. In Connecticut, 38 people died that year. The CDC reports that most asthma deaths are avoidable with proper treatment and care.
In Connecticut, about 299,336 people are living with asthma. Nationally, 25 million Americans have asthma; about 7.7% are adults and 8.4% are children.
“The asthma rate in Connecticut is about 10% in children and 10% in adults,” said Michelle Caul, director, Eastern Division, Health Promotions at American Lung Association.
She said that an asthma diagnosis can be challenging with children.
“Sometimes the only symptom that presents in children is coughing, and obviously coughing is a symptom of 1,000 other things, so ruling out all of those other things in order to get an asthma diagnosis can sometimes be difficult,” Caul said.
Giving Back To Community
Buckley didn’t know her son’s asthma wasn’t well controlled until after his death, when she was in Washington, D.C., attending Asthma and Allergy Day at Capitol Hill with her husband. While listening to a doctor speak about the signs of asthma not being well controlled, she said, she realized what happened to Ben.
“Nobody had ever told us that [Ben’s] asthma wasn’t well controlled,” she said. “Nobody ever told us that you shouldn’t be using albuterol [a rescue inhaler] that much, that his asthma wasn’t controlled, and we had no idea. He was going to his regular appointments with his asthma doctor. He went to his pediatrician. No one ever told us.”
That moment of realization is what motivated Buckley to do what she views as her most important role as a parent who has lost a child to asthma—raising awareness about asthma and supporting community programs, especially in the arts. Ben aspired to be an artist.
Buckley and her husband, Jeffrey, decided to form a nonprofit, Ben Was Here. The seed money for the nonprofit came from about $40,000 in donations that they received while Ben was hospitalized.
“We were talking in the hospital, and my husband said, ‘I don’t want to keep this. You should do something with it,’” she said. So, we decided to start a nonprofit.
Over the years, the funds raised have been donated to the elementary school their children attend, a program dedicated to cultural arts in Southington, iPads for children in the school where Buckley taught, the library building project, and to help cover the cost of prescriptions for asthma medication.
Buckley said the foundation tries to help anybody it can.
In talking about what she’s most proud of Buckley said, “I think I’m really proud of the awareness we’re bringing about asthma to the state.”
Awareness about uncontrolled asthma is particularly important. Caul says there’s a quick formula to determine if a rescue inhaler is being used too often.
“If you’re taking your quick-relief inhaler more than two times per week, and you’re waking up at night with asthma symptoms more than two times per month, and if you’re refilling your quick-relief inhaler more than two times per year, your asthma is probably not well-controlled.”
To help take care of someone with asthma, Caul said, its important educate yourself. “The American Lung Association has an online program, which is free of charge, with an hour-long module called asthma basics. It’s a good starting place for parents of children with asthma, anybody who has asthma, or anybody who is a caretaker of somebody with asthma.”
She also said to ask questions and stay in contact with you doctor.
“If you feel like your child’s asthma is not well controlled, you should be in contact with your primary care physician.”
For information on Ben Was Here click this link.
Bryan is a senior in his last semester studying journalism and history at Quinnipiac University. He plans to work as a full-time journalist after graduation in his home state of Massachusetts. In his free time, you can find him playing guitar, watching movies, or hiking outdoors.